We are partnering

to build a better tomorrow for Prader-Willi Syndrome

Stronger together

PWS Stronger Together is a collaboration between the two charities: The Foundation for Prader-Willi Research UK and Prader-Willi Syndrome Association UK. United in our mission to push research and development forward, driving positive change for the PWS community in the UK and beyond. While both organisations maintain independent operations, they join forces for this initiative.

We know that by working together our two organisations will be able to achieve more. We want to ensure the effective use of limited resources to further knowledge and understanding of PWS and support all those impacted by PWS in the UK. 

Each organisation brings its specialist expertise to this initiative. Please click on their logos to learn more about their incredible work.

Collaborate to ensure the best possible outcomes

Prader-Willi Syndrome (PWS) is a rare genetic condition causing an overwhelming and uncontrollable drive to eat that can be life-limiting, as well as learning and physical disabilities. 

Rare conditions are little understood and often underfunded both in terms of support services and research to find effective medication and treatment. Support for research, translating research into practice and supporting families with each step of the PWS journey requires joined-up thinking and effective use of limited resources.

FPWR UK is dedicated to raising funds for vital research for PWS.  PWSA UK is a membership organisation focused on providing information and services to support people with PWS. 

Working together allows us to combine our complementary strengths and expertise to reach a wider audience deal with the complex issues faced by the PWS community approach.

Ageing in PWS

OUR CURRENT INITIATIVE

As medical, social and residential care of PWS improves, there are increasing numbers of adults with PWS reaching middle age and beyond. 

It is unclear if there are specific medical problems faced by older people with PWS.

In general adults with intellectual disability appear to develop age-related health problems more frequently and at an earlier age, and it has been suggested that adults with PWS may also be at risk of premature ageing.

We want to support research that will discover the health problems in older adults with PWS, and if there is any evidence for early ageing and increased risk of cognitive decline in adults with PWS in the UK.

We believe that this research will not only shed light on potential health challenges faced by older adults with PWS, but also pave the way for preventative treatments aimed at enhancing their quality of life and extending their lifespan.